Cardiology Appointments 9 and 10..

Just wanted to give a quick little update. Madison continues to do absolutely fabulous! (I keep my fingers and toes crossed at all times..) My heart is definitely full with gratitude. As of appointment #9, we have graduated to once a week appointments. Madison's medications are still the same, little fluctuations have occurred, but still 13 meds a day.

Appointment #9 was a lot of fun! Hillary, it was so nice to bump into you. I'm so glad that Daxton and Madison shared their appointment. It was funny to hear the reaction from the techs and Dr. Everitt when they heard we were sitting in the same exam room. We should plan more "play dates" like that one. Anyone else want to join?

I was wondering if any of the heart moms would like to meet for lunch? I love the support that we provide for each other and it would be nice to relax and chat. Because our kiddos are sensitive to germs and such, maybe we could meet on a Saturday when the dads might be available to babysit for a little bit. Let me know.

On a more serious note.. through blogging, we have had the opportunity to meet some amazing, strong families. There is one particular family that could use your help. Would each of you please keep Mason and his family in your thoughts and prayers? He is only a couple months older than Madison. He is a heart kiddo who has become my Heart Hero. He is such a tough little guy. His family is in the midst of having to make some tough decisions and could use some "behind the scenes" help. You are welcome to click on his name (Miracle Mason) and read more about this cute little boy. We love you Mason and your mamma is amazing!

Cardiology Appointments 6, 7, AND 8

Finally an update...

Madison continues to do well and puts us in awe everyday. Her accomplishments amaze me! She amazes me!

In regards to her Cardiology appointments, visit #6 didn't go so well. BUT, luckily visit #7 and #8 made up for it. During Madison's visit #6, she lost some weight. Sitting very happily on the scale, Miss Madison weighed in at 17 lbs. 4 oz. Seeing her numbers pop up on the scale, I immediately gasp out loud. The tech said, "what? Is that good, or bad?" I simply picked Maddie up from the scale and asked if we could weigh her again. I was so bummed. I didn't realize just how excited and relieved I had become over her finally reaching 18 lbs. Had she really lost a whole pound in two days? Yes. Not only had she lost a pound, but her blood pressure was high, and Dr. Everitt wasn't loving the sight of fluid around her heart.

The fluid around her heart caught me off guard as well. I assumed the fluid was gone, or at least something that we didn't need to worry about. ggrrr! But, Dr. Everitt explained that she has always had a little bit a fluid lingering around her heart. She was hoping that it would be gone by now, but it's not. She's just going to watch it and treat it as we go. And she would like us to meet with the dietician at our next visit. Dr. Everitt also increased her Enalapril (blood pressure med.) and her lasix (used to eliminate water in the body).

I continued to be an emotional mess for the entire day. I was bummed, worried, and wondering why I was still playing the "Heart Failure Game.." Madison has a brand new, perfect heart. I didn't understand.

Appointments # 7 and #8 helped me to understand that although Madison does have a new heart and it is perfect; she still has a heart condition. Just a different kind of heart condition. She will always see a cardiologist and she will always be on a lot of medication (I knew that), but for other reasons than treatment of heart failure. Dr. Everitt explained that at this time, Maddie is very dependent on her medication. She probably outgrew her Enalapril dosage, which caused her weight loss and blood pressure increase.

So.. once again, I'm happy to announce that at appointment #7, Madison weighed 18 lbs. 3 oz. And at appointment #8, she weighed 18 lbs. 6 oz. We met with the dietician and she is not worried about Madison at all. She did encourage us to continue adding extra fat to her food until she becomes very chunky. And I feel much better. As for the fluid, it's still there. It hasn't changed, so we are just watching it.

Thanks for your thoughts and prayers. We (I) appreciate them so much.

Goodnight.

Cardiology Appointment #5

I am happy to announce to the world that Miss Madison is finally 18 POUNDS! Holy Cow, she made it! Our little girl has been 17 lbs. since JUNE. Now we will always remember.. 18 lbs. at 18 months old. Since receiving her new heart, Maddie is eating great. And has an appetite.. imagine that. She had gained 6 oz. in 2 days resulting in 18 lbs. 1oz. at the time of her appointment.

K- No laughing at the pictures below.. May I remind you that I'm a Social Worker, not a Photographer. (ha ha) I had brought our actual camera, in hopes that Maddie would be 18 lbs. during this visit and I could take picutes of her on the scale, BUT forgot the camera in the car. So, I relied on my trusty camera phone and couldn't seem to get the perfect picture that I was after. But here ya go.. Miss Madison, 18 lbs.

The rest of Maddie's appointment went perfect.

I've had a couple people ask how Madison is doing in taking her medication and she is doing really well. Thanks for asking. She takes them a lot better for Mark than for me. I don't know why. She hasn't thrown up any of her meds (or anything) since coming home. She still takes a lot of medication - 13 to be exact. We switched her meds from Primary Children's to our pharmacist in Provo. I love our pharmacist! I've decided that when you take a lot of meds, you need to love your pharmacist. (ha ha) This was a great choice on our part! They have been so accommodating and they truely care about Maddie. They always ask about her. I love that safe, secure feeling. I felt as though Primary Children's pharmacy was too busy. (I don't know..) I'm laughing right now because we also ordered 200 syringes. Yep, 200. I'll let you know when we order more. :)

6:30am: On our way to Madison's Cardiology appointment. I always try to dress Maddie really cute since she doesn't go anywhere else..

Love, Mommy and Maddie

(Madison's dad forgot to take pictures of her gold shoes. That's ok. We'll remind him next time.)

Cardiology Appointment #4

I decided to number our cardiology appointments. Just for fun, no other reason. (don't laugh too loud) It'll be interesting to see how many appointments Maddie has. I've started counting after transplant simply because it was her transplant that I began blogging. We have a ton of appointments ahead of us, so it will also help readers to follow where we are. :)

In regards to Madison's new heart, her appointment on Monday (December 28) went perfectly. Her heart is beautiful and beats without any error. I am laughing as I write this because her personality has changed so much since transplant. She is still a happy baby; no longer the constant fussiness that we had grown accustomed to. BUT she is beginning to act more and more like a typical 1.5 year old. I love it, but she was a little stinker at her appointment. She screamed through her entire echo, which was only about 15 minutes. I had her purse full of toys and her favorite food, but nothing was working. She even spit out her meds right in front of our transplant coordinator (Emily). She refused to wear her mask, even though I told her how pretty she looked. And then she had a little temper tantrum while trying to get dressed. In case you are wondering... she's feeling just fine! (and I love it..)

As this month is coming to an end, I'm beginning to be an emotional mess. I can't believe what all we've done this month. I should make a checklist just to have fun checking things off. Who would've thought?? I'm also in awe at the number of blessings and miracles we have witnessed. We are so lucky to have great friends and family and to have received the overwhelming support that we did. Again, thank you to everyone.

Speaking of blessings.. on December 24, our family received another blessing. We got a knock on our door at 11:30pm Christmas Eve. I thought I was fast in opening the door, but when I opened the door.. nobody was there. Instead, sitting on our doorstep was an entire ham, the book Christmas Jars (has anybody read it?), and a jar full of money. To whomever you are.. thank you. Mark and I spent the rest of the night in awe. We couldn't talk because our hearts were so full; instead we would look at each other and begin to cry.

We have learned more about people and the pure love of Christ, in the last 25 days than we have ever known. For that, I am thankful and humbled. I will never forget it. It has changed me. It has changed our family..

********************
Of course, without disclosing any confidential information, Michelle (our other transplant coordinator) informed me that there will be some FUN families at our Wednesday appointment. And that I knew them. hmm.. We'll keep a look-out for whomever you are. See you tomorrow morning!

(pictures are coming..)

Doing very well!

I have a permanent smile on my face. I am so happy and grateful for how things have turned out with Madison. I feel like shouting for joy, laughing, and crying at the same time. I've mentioned this to a few friends, but this experience has been the most spiritual experience for Mark and I. Never before have we felt so close to our Heavenly Father and His direct plan for Madison and our family. Going through this has raised us to a whole new level. We will never take life for granted.

Update on Madison: Maddie is continuing to do amazingly well. Today we had our 3rd cardiology appointment since coming home. Madison has cardiology appointments twice a week (Monday and Thursday) At each appointment, Madison has blood work, an echo, EKG, meet with one of the Transplant Coordinators (Michelle or Emily), and then our appointment with Dr. Everitt. Each appointment has looked better and better. I still love watching her echos. There is such a dramatic difference between her old and new heart. Her new heart is absolutely perfect and beautiful.

Yesterday, I had the opportunity of finishing the letter to our donor family. Mark and I think about our donor family all day, every day. We are overcome by their love and willingness to donate. We love them. As this Christmas time is going to be difficult for them, Mark and I felt that it was important to have them receive our letter before Christmas. By the power of 'e-mail', our donor family should receive their letter tomorrow. Writing the letter was one of the toughest and humbling things I have ever done. I'm grateful for the opportunity I had to write this letter. It's another moment I wish others could experience; the deep feeling of gratitude, saddness, pure happiness, and peace of mind. It took 1/2 box of tissues and a husband checking in to offer some counsel. I hope that I will hear back from this family; the family that allowed us to witness a miracle. Through this Christmas season, will you please keep our donor family in your prayers? I can't imagine enduring what they have been through, especially during the holidays. I am so sorry for them.

I would like to share a line from my letter to our donor family:
"In the same country, with only a couple states seperating us, one family endured a tragedy while another embraced a miracle. From deep within my soul, I thank you for allowing your baby to donate."

Goodnight.

We are Home!

We have been home for 3 days now. Yeah!. Can you believe it? Another miracle! Madison's chest tube came out and instead of a 24 hour observation, we had a 3 hour observation. Dr. Everitt released us on Wednesday afternoon. It is amazing..

Since we have been home, we have had a few of adjustments. I wish you could be a fly on the wall in our house, especially with the meds. It can be pretty hilarious. Madison came home on 13 meds. You should have seen the look on people's faces when we picked up our order from the pharmacy. (I should have taken a picture of everyone starring at us..) I wanted to share some of the instructions we have to follow when giving Maddie her meds.. (I hope you find this kind of humorous..)
1. Take with Food.
2. Take on empty stomach.
3. Do not take with milk products.
4. Refrigerate.
5. Keep out of light.
6. Avoid contact with other people.
7. Do not refrigerate.
8. Drink plenty of water.
9. Do not eat grapefruit while taking this drug.
10. Chew tablet before swallowing.
11. Swish in mouth for as long as possible before swallowing.
12. Avoid prolonged exposure to sun.
13. Take Monday, Wednesday, Friday only.
14. Take 4x daily.
15. Take 3x daily.
16. Take 2x daily.
17. Take once a day.

I'm happy to report that Madison is doing very well at taking her meds. I found my solution; it was simple. Flavor the meds. Duh! The hospital doesn't flavor meds when you are an inpatient. (Can you only imagine what that order to the pharmacy would entail?) I had questioned her nurse a couple times about flavoring, but never seemed to find a solution. Her meds were absolutely, crawl out of your skin, awful ... but much, much better now.

In regards to everything else, Madison continues to soar. She looks so good.. she glows! I didn't realize how sick she actually looked before. Her decrease in heart funtion was so gradual, which made it difficult to see her little body getting sicker. A once fussy baby is now the happiest person in our home. She is crawling around the house, pulling herself up on things, and simply enjoying life as a toddler. Madison is also eating extremely well. She now eats double what her brother eats. It is cute to see her excited for food rather than me begging her to eat. Dr. Everitt reminded me that some of Maddie's meds could make her really hungry and thirsty ... or she could just feel better. I'm going with the 2nd guess. I love that she feels good and is healthy. I love that she is happier. I love that she has more energy and is interactive. I love that she is more of who she is. I love that I have my baby girl back.

Again, thank you for your prayers, thoughts, and support. We love you.

(I have a couple more hospital entries that I want to post.. stay tuned.)

She Did It!

I can't help but hold my little girl and whisper to her... you did it! As our time here at Primary Children's is winding down, floods of emotion are upon me. It's definitely a Bitter-Sweet feeling. I can't seem to look at or talk to anyone without crying. Although I'm a mess, I don't think I need therapy (ha ha) .. I'm simply so thankful and humbled by this experience we've had. I can not believe what all we've accomplished this last 2.5 weeks - and none of it was planned. I have witnessed so many miracles and I'm so thankful for each one of them. I truely Stand All Amazed.

While there is much I want to write about ... I'm exhausted and will save them for another entry. :)

Madison has continued to do remarkably well through everything. Her last chest tube should be coming out tomorrow morning. Her medical team would like to observe her for at least 24 hours and then we will be going home. Wow... yes, another miracle will happen tomorrow.

Here is our busy schedule for tomorrow: (just incase anyone is curious what we do all day :) )
5:00am: X-rays
6:00am: Labs
7:00am: Order breakfast
8:00am... Meds begin (Madison takes 10 medications at this time. It will take us 2 hours to eat breakfast and take meds .. and not throw up. While we have had many close calls, Maddie hasn't thrown up her meds in 3 days!!)
8:30am: Doctor's rounds.
10:00am: More Meds arrive (Madison has 3 more medications to take..)
10:00 am: Echo
** Sometime in the morning... chest tube comes out.
12:00pm: More meds arrive
Nap tme? (at least for me.. please?)
Snack
More meds
Play time
Dinner
More meds
Time for bed..

**Seriously, if anyone has any suggestions for taking / giving meds - I'll take them. Maddie is doing really well... right now. But, I'm not sure how long it will last.

Thank you and goodnight.

(Shauntelle... I need to call you. I keep forgetting and now we are going home. I would really like to get together. I will call you tomorrow. Will you please call me, if I forget? (801) 649-9551. Thank you.)